Health-related quality of life in children and adolescents with congenital diaphragmatic hernia: a cross-sectional study

Bojanić, Katarina and Grizelj, Ruža and Vuković, Jurica and Omerza, Lana and Grubić, Marina and Ćaleta, Tomislav and Weingarten, Toby N. and Schroeder, Darrell R. and Sprung, Juraj (2018) Health-related quality of life in children and adolescents with congenital diaphragmatic hernia: a cross-sectional study. Health and Quality of Life Outcomes, 16 (1). ISSN 1477-7525

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Abstract

BACKGROUND: Patients with congenital diaphragmatic hernia (CDH) have a high residual morbidity rate. We compared self-reported health-related quality of life (HRQoL) between patients with CDH and healthy children. ----- METHODS: Forty-five patients with CDH who were born from January 1, 1990, through February 15, 2015, were matched to healthy, age-matched control participants at a 1:2 ratio. The health records of the study participants were reviewed to determine comorbid conditions, and HRQoL was assessed by both the participants and their parents with the Pediatric Quality of Life Inventory (PedsQL). The HRQoL scores of the patients with CDH and the control participants were compared by using analysis of variance to adjust for age group and sex. Among patients with CDH, analysis of variance was used to compare HRQoL scores across groups defined according to their characteristics at initial hospitalization, postdischarge events, and comorbid conditions. ----- RESULTS: Compared with control participants, patients with CDH had lower mean PedsQL scores, as reported by the parent and child, for the physical and psychosocial domains (P < 0.001). Risk factors associated with lower parent-reported HRQoL included bronchopulmonary dysplasia, longer initial hospitalization, severe cognitive impairment, and orthopedic symptoms; among patients with CDH, low HRQoL was associated with chronic respiratory issues. ----- CONCLUSION: Patients with CDH had lower HRQoL compared with healthy participants. Parent-reported HRQoL tended to be higher than child-reported HRQoL. Results were also inconsistent for the risk factors associated with HRQoL obtained by using child- and parent-reported scores. Therefore, when interpreting HRQoL in CDH survivors, a proxy report should not be considered a substitute for a child's self-report.

Item Type: Article
Additional Information: © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
MeSH: Adolescent ; Analysis of Variance ; Case-Control Studies ; Child ; Cross-Sectional Studies ; Female ; Hernias, Diaphragmatic, Congenital/physiopathology ; Hernias, Diaphragmatic, Congenital/psychology ; Humans ; Male ; Parents/psychology ; Quality of Life/psychology ; Risk Factors ; Self Report ; Severity of Illness Index
Departments: Katedra za pedijatriju
Depositing User: Kristina Berketa
Status: Published
Creators:
CreatorsEmail
Bojanić, KatarinaUNSPECIFIED
Grizelj, RužaUNSPECIFIED
Vuković, JuricaUNSPECIFIED
Omerza, LanaUNSPECIFIED
Grubić, MarinaUNSPECIFIED
Ćaleta, TomislavUNSPECIFIED
Weingarten, Toby N.UNSPECIFIED
Schroeder, Darrell R.UNSPECIFIED
Sprung, JurajUNSPECIFIED
Date: 14 May 2018
Date Deposited: 20 Sep 2019 07:56
Last Modified: 25 Aug 2020 07:11
Subjects: /
Related URLs:
URI: http://medlib.mef.hr/id/eprint/3375

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